Preparing for a Child with Special Needs

Learning before birth

At her eight-week ultrasound Courtney Beyers' baby looked perfect. Twelve weeks later a routine ultrasound showed a very different picture. The baby's stomach was abnormal. A heart defect was noticed. Ultimately the baby was diagnosed with having Heterotaxy syndrome, a disorder that results in certain organs forming on the opposite side of the body.

In December Beyers gave birth to baby Lucy. According to Beyers, Lucy is likely only one of a handful of babies born with this condition last year. Upon learning of her child's disorder, Beyers shed a lot of tears and felt a great deal of emotions.

"It was awful. Just devastating...When you first hear of Heterotaxy it's like a death threat," Beyers said.

She decided not to run to the Internet despite her wanting answers. "My suggestion is to stay off the Internet because there are so many misreports," she said. Instead she spoke with her obstetrician, specialists in maternal-fetal medicine and a pediatric cardiologist. "My doctor was great and got us in with the right kind of people and followed us along the entire process," she said.

At the time of the interview Lucy was 8 days old and receiving treatment at Riley Hospital for Children at Indiana University Health. "She's doing okay. There's a roller coaster of emotions and it's hard with a 3-year-old at home. We hope to be out soon," said Beyers, who then conceded Lucy's expected hospital stay seemed to changed every hour. Sometimes doctors were talking about Lucy staying in the hospital a week or two, sometimes it was months. The only known at the time was that Lucy would have open heart surgery within the year.

Her husband quickly got in the habit of visiting Lucy before and after work each day. She juggled visiting Lucy in the middle of the day while still caring for her 3-year-old son the rest of the time.

Because the Beyers were aware of Lucy's condition prior to her birth they were able to better prepare themselves for decisions on medical options they were facing in the short-term.

This is one reason many parents opt for prenatal tests. Of course there are screening tests for only a handful of disorders such as neural tube defects and Down syndrome. Many disorders like autism cannot be predicted.

Megan Tucker, licensed genetic counselor with St. Vincent Health, said part of her goal is to find out how much information families want to know. She said if expectant parents don't want to know if their child has a disorder then they shouldn't have certain tests. Other families want to know for sure. "Our job is to help them figure out where they are and let them know which testing options will help the most," she said.

Tucker said most patients who walk through her door for prenatal screenings leave with good news. She estimated that about 10 percent of her patients learn their child will be born with a special need.

Beth DeHoff, family support coordinator for special care nursery/maternal-fetal health with IU Health University Hospital, recommends families who know their child will be born with a special need find out as much as they can about the special need they are going to deal with. "It seems to me most parents do better when they know what they are facing. It's less scary when you know what's coming," she said.

DeHoff has been there too. When she was 16 weeks along with one of her pregnancies she learned she was carrying a baby with Down syndrome. "Nobody is really prepared for that diagnosis. It was a shock and it was hard to face at the time," she said.

Families who receive a prenatal diagnosis are thrown a lot of options they may never have wanted to consider and it can be very scary DeHoffrank said. They are sometimes asked whether or not they want to keep the child, put it up for adoption, terminate the pregnancy or forgo heroic measures once the child is born. It can be tough.

"What I found to be most helpful was to talk to other parents," she said.

Supports are in place to help families make more informed decisions on their pregnancy and to help them understand what lies ahead for them and their child. For instance, St. Vincent and IU Health connect families with a team of medical professionals who can help them understand what's going to happen before it actually does. Many times they can also connect parents with families who have already gone through a similar situation.

Indiana is also lucky to have an organization called About Special Kids that is set up to help answer parents' questions about children with Special Needs and to connect them with the support they need. MUMS National Parent to Parent Network is another organization that can provide help.